Monday, December 18, 2017

Follow the Light

** Before you read this blog, please listen to the song "Follow the Light" by the Bethel Sanctuary Choir. The lead is sung by my Uncle Tom. You will need to listen to this song to understand the blog post. You can listen to it here.

Everyone has bad days. Maybe you got a flat tire. Maybe you had a fight with your friend or maybe you just woke up on the wrong side of the bed. Whatever the cause, on these days we tend to feel angry, annoyed, upset, anxious, frustrated, morose or all of the above, but we (hopefully) have someone to talk with and vent our misgivings to. Sometimes our chosen counselor and caretaker talks with us and gives us what they believe to be their best advice. Sometimes all we need is sometime to simply listen, give us a hug, dry our tears and help lead us out of the darkness.  

Yes, everyone has a bad day, even those with Alzheimer’s disease. Last week my mom was having a bad day and this bad day happened to coincide with the day she was getting her haircut. Unfortunately, because my mom’s disease has progressed and she is in the more severe stages of Alzheimer’s, it is hard to understand her. Growing up, I always experienced her as more of quiet person, an introvert, but now she babbles incessantly, barely stopping long enough to take a bite of food. Thankfully, I mostly hear “happy babble” from her. Her happy babble consists of sounds, repeated syllables and sometimes a smile or laugh thrown in the mix. On some days, I am lucky enough to get a few words or even a phrase, but on this particular day there was no happy babble. There were sounds and repeated syllables, but these were laced with terrified expressions, moans, cries, sadness, fear and frustration. And I could not understand anything she was trying to communicate with me.

Chinel (Mom’s hairdresser, friend and personal angel) and I were doing everything we could to help her. I was straddling her wheelchair at the legs, with my face right near her’ s, looking her in the eyes, trying to get her to focus on me. There have been times that I can refocus her, reintroducing myself and my presence and she will flip her switch from anguish into authentic joy. This didn’t work. I held her hand and rubbed her arm. I hugged her, gave her a kiss, told her I loved her. Still nothing. Chinel and I tried talking with her, telling stories. Mom would stop, listen and think about what we were saying, only to go right back to her pit of distress. I played soothing music. When nothing else works, the soothing melodies of Miles Davis or Chris Connor usually does the trick, but again, no luck. Just like with the conversations and stories Chinel and I tried, she soon gave way to the darkness.

Maybe she was tired. Maybe she was hungry. Maybe she was uncomfortable or in pain. Or maybe she was scared of something that was happening in her reality that we could not see or comprehend. Whatever it was had the power and no matter what I did, nothing seemed to ease her troubles.

And then I tried one more thing.

There are people in our lives that carry an energy with them that just makes you feel good. They have a zen way of being. They exude kindness and bring peace to your soul when you are around them. My Uncle Tom, my mom’s youngest brother, is one of those people. On top of that, he is an amazing singer and I just happened to have a song on my phone where he is the lead singer.

I may not be able to understand most of what my mom is saying these days, but if you ask her a yes/no question she can usually answer it. I got her attention and asked her if she wanted me to play Tom’s song. She immediately stopped her anxious babble and said yes. So there it was. We were about to play a Christmas song and create a major musical faux pas because were still about two weeks away from Thanksgiving, but play it we did and we played it over and over. His voice, her recognition and her remembrance of her little brother and the song all brought some much needed peace to my mom.

The lyrics of Tom’s song really hit home with me that day. They took on new meaning for me. I was seeing them through my caretaker lens. These lyrics helped explain how I approach my every day experiences with my mom. On that day, and like many others, I was looking for a way to help my mom. I never know how she will react to me or to what I do for her. I was “Seeking direction, seeking what’s right, listening for angels, songs in the night” any sign of what might bring her joy or ease her pain. “Where will this lead me?” I never know. Every day, every minute, you never know what you will get with this disease. I am just doing my best to care for her and love her in the only way I know how. All I can do is “follow the light.” I will continue to follow the light of love, radiating it by offering her unconditional love, patience and acceptance. “And whatever lies ahead” we will tackle together, so my mom will know that she is “never alone.”

As you go through each day, whether it is the best day of your life and you have light to share with others or you are having a day where you can’t seem to break through the darkness, follow the light. There is always enough love, so share it, embrace it and accept it.

Tuesday, August 15, 2017

Fuel the Fire

“Stop giving energy to things you don’t want.” ~Wayne Dyer

I was born and reared in Charlottesville, Virginia.

When I was told to check the news to see what was going down in Virginia, I was horrified and made heartsick by what I saw and read.  As I stood in a park at a party on a beautiful day, I reacted physically.  I felt as though both my mind and my body – the essential “I” - was misfiring.  I was trapped in a bubble of false existence in which I was hearing a misalignment of words and meaning.  My mind and body could not make sense of or accept the news of what was happening in the town I love so much.

Like moths to a flame, almost everyone I know was drawn to this horror. Articles were posted about supposed “truths” we need to know about Charlottesville or its history. Comments flowed back and forth about hate groups and the people who were said to have prompted these troubles.  People spouted about what is wrong with southerners and their history.  Over and over, people blamed one politician or another. For the most part, the messages focused on hate, violence, anger, madness.

All weekend I struggled to understand the overwhelming feelings I was experiencing. Trying to separate the racket and cacophony of feelings that battered me. The bottomless pit of anger, the confusion, the hate was all too much.  Did no one understand that angry posts and articles spewing blame and hate are not done from any basis that can help us exist together? As I lay in bed, tears streaming on my pillow, my feelings started to become clearer.

The anger and violence is not the fault of one person, one statue, one town, one group, one politician.

The blame and hate people send out every single day simply adds fuel to the fires of difference and isolation, of us vs them. The pictures comparing hate groups give them fuel. Spouting hate for this politician or that post gives them power, not you.  As you announce your anger and hate, you blow more oxygen on their flame.  I won’t do that.  I can’t do that.

It has been said that anger brings change, but so does love, compassion, and understanding. Each human being has their own experiences and their own truth. We do not have to agree with or even to understand their truth. We do have the power to choose how we react to it.  

I am first generation American on my mother’s side. She and her parents were on Hitler’s Death list, had to go into hiding in France, and finally escaped to America. On my dad’s side, we are almost a founding family of Virginia, arriving in this great country in 1609. Two people with very different backgrounds raised me to know love, kindness, compassion, and acceptance. I am not na├»ve about what is going on in our world, our country, and our towns, but I must choose love, not hate.

Thursday, February 23, 2017

The Faces of Alzheimer's

Take a look at these pictures of my mom. 
In which photos does she have Alzheimer's?

What does Alzheimer's look like? Think it is easy to tell? Think again.

Alzheimer's disease can turn the innocent faces of our loved ones into the masters of disguise. Over time they learn to accommodate for their shortcomings. They make excuses or simply learn to do simple tasks another way. The way they once lived, a life of confidence and independence, is slipping through their fingers. At some point the reality of the effects of the disease can no longer be ignored by anyone. Sure, it is scary.  They are scared. You are scared and rightly so.

Alzheimer’s disease is not kind.  There is no cure. There are no survivors. And the disease creates an alarming new reality for the victim and caregivers, which is confusing for all. At first, they are lucid enough to know, at times, that what they are saying or doing is not in line with how they once lived their life. They wander, lose items, and get lost. Names, dates, appointments and even their own personal story and history is forgotten.  The ones they love the most will be forgotten or confused with someone else. And it gets progressively worse over time. Sometimes they go quickly, while others, like my mom who has been diagnosed with the disease for over a decade, must suffer year after year. 

We all suffer because of Alzheimer’s disease.

Alzheimer’s disease takes a toll on family members, friends and community members. We all must decide what roll we are willing to play in the victim’s life.  Some cannot handle the pain of seeing a loved one suffer from the disease and simply make the choice to no longer show up. It may seem cruel, but I have seen it happen. I have seen a mom of many children never have a visitor- not a family member, not a friend or church member, no one from her past life came to visit. Others are the complete polar opposite. They drop everything in their lives to take care of a loved one -24 hours a day, every day.

I am considered to be caregiver for my mom, despite the fact that she lives in a facility with 24-hour care. I am her Power of Attorney; I still do her laundry for her, buy her clothes and toiletries and make sure she gets her haircut. I visit my mom regularly and make sure she gets the care she deserves. Most importantly, I show my mom unconditional love.

The polarity of feelings that occur while loving and taking care of my mom is exhausting. The highs of surprising moments of clarity I experience with my mom can quickly be erased by the devastation of a single moment- a moment of my own clarity on the realities of the disease. Highs and lows, pain and laughter, acceptance and denial, happiness and anger- these are my day to day reality.

Many of you may be in the same boat I am, but for those who are not, you cannot comprehend what it is like to love an Alzheimer’s victim. Let me help paint a picture of what it is like. Take a moment to think of one of the people in your life who you love the most. Now, conjure up memories you have had with them- trips, quiet moments, the ways they loved you, their smile and laughter, inside jokes, their idiosyncrasies and favorites meals and hangouts. Now slowly take all of that from them, little by little, bit by bit. Make sure you steal parts of their life at random. Place them in a new reality. Let their new reality consist of hallucinations, personality changes, confusion, and anger and top it off with a whole group of people taking away every bit of their independence. Make sure everyone tells them what they are supposed to think and do. If you aren’t upset enough about seeing your loved one suffer through their new hell on earth, you get to navigate it right along side then. And there’s a catch. They are no longer the person you once knew, so understanding how to help console them and support them on their journey is going to be a guessing game. At some point your loved one no longer understands their situation, but you do. You get to understand and experience it all.

But we aren’t done yet! Now we will focus on you. Can you imagine what it feels like for you now that your loved one no longer knows your name or even recognizes you? Take the person who loved to read and see them struggle to make sense of words or physically see the words on the page. See the individual who has a bachelors and masters degree, who once thought deeply, loved art and theatre and worked in an academic environment and now imagine them, slumped over in a wheelchair unable to do anything for themselves. Remember the bright eyed, beautiful person who made sure you knew how much you were loved with soft verses sung in your ear, hugs and kisses offered unconditionally, and cheers from the bleachers, but then that person mutates into someone who stares at you blankly, trying to fit you into their new reality of incoherent babbling and hallucinations of animals, people and things you cannot see, hear or understand. The strong, vivacious, healthy person you knew turns into a weak, hobbled individual who instead of a enjoying a hearty meal and an evening walk with the neighbor must now endure pureed food and a day filled with sitting in a wheelchair talking with their invisible friends.

The cruelty of Alzheimer’s disease does not discriminate. It will latch on to men, women, scholars, farmers, and any individual of any religion, ethnicity, race and socioeconomic class. Once the jaws of the disease latch on, they never let go.

Every 66 seconds an individual in the United States develops Alzheimer’s disease. 

Alzheimer’s is not just a disease, it’s an epidemic, one I live with, we all live with, every single day until we find a cure.

So, are you still wondering in which pictures my mom had Alzheimer's disease?

All of them.